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Care for Rare

Nûby Review

So, we were lucky enough to be selected as Nûby brand reps last month and were sent a box of products to try out… And, we love them all!

Here’s some of our favourites:

The Nibbler

  

What a fab idea this is! Laurence loves fruit and in particular bananas, but what a mess they make. They get slimey fast and he would struggle to hold on to them. The Nibbler is a mesh net that the food goes into and then fixes onto a handle so your little one can get a good grip. Yay! No more sticky banana paws!

BugaLoop Teether

  

Laurence has not put this down! He loves all the different shapes and textures and having had his first little tooth break through, this has been a life saver!

  

Octopus Bath Toy

Penelope loves bath time and playing in the bath. Her favourite thing is bath crayons but they make such a mess! She was really excited to have some new toys to play with in the bath and especially loves the octopus bath toy which also comes with underwater themed rings so straight away it turned into a game of ring toss. She doesn’t get bored of it and is all smiles throughout bath time!

  
(Yes she uses Tresemmé 😂)

Bandana Teething Bib

This is one of my personal favourites! LOVE the designs AND it doubles up as a teether wherever you are. They’re also super absorbent!

  

Free Flow Pop Up Beaker

Penelope won’t leave the house without this now! She has become attached and loves having all her drinks in it! It is great for taking out and has also survived many drops, a toddler must have!

  
  

Dinner times are lovely and colourful, it’s made weaning lots of fun!

This spoon is also extra long to fit in jars

  
You can find all these and more at Nuby.co.uk

My Random Musings
Mr and Mrs T Plus Three
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BWS Awareness Day and why it is so important

Wear yellow today and show your support! Using the tag #howbigbws across social media. Here is why it is so important to raise as much awareness as possible:

  
If you’d like to find out more, please visit Howbigbws.com

💛💛💛

Rare Disease Day and why it’s important

Penelope was born in June 2014 and after a very rocky start (needing ECMO treatment to save her life) we soon learnt that she had a rare disease called hyperinsulinism. This is essentially the opposite of diabetes whereby too MUCH insulin is produced causing potentially fatal low blood sugar. She began medication and responded extremely well, however some months later when the genetic cause of her Hyperinsulism was being investigated it transpired that it was the result of ANOTHER rare disease- Beckwith Weidemann syndrome. This is an overgrowth disorder with a myriad of symptoms affecting each individual differently. In Penelope’s case her pancreas was enlarged and thus secreted too much insulin causing hyperinsulinism and low blood sugar. But, the main worry attached to BWS is an increased risk of childhood cancer for which she receives regular screening and blood tests. We feel very lucky everyday for getting the diagnoses of her rare diseases relatively fast as it means she now gets the care she’ll need, until the age of 8 when fortunately the chances diminish. Luckily there is a great support network of parents on hand from around the world who help each other out with advice and such like. I try to raise awareness for these rare diseases as I know that getting a diagnosis isn’t always as straightforward as it was for us but can save lives in some cases! 

  
Happy Rare Disease Day! 
For more info: Hyperinsulinism & Beckwith Weidemann

More Exciting News for Penelope and Friends

Yay! Lots happening for Penelope and Friends. As well as working with the lovely lady from @bitsandbows2 (check her out on Instagram by the way, she sells lovely baby accessories); I have also set up another account called @penelopes_preloved. I’m currently going through clothes that are unfortunately too small and some that she only ever wore once or twice because she is so fast at growing! Once that’s underway I am putting all proceeds into making more NICU bags!

It’s also Rare Disease Day at the end of the month so I’ve been sharing Penelope’s Hyperinsulism story which will also raise awareness and I’m working on ideas with some lovely BWS mums too. Keep your eyes peeled! 
  

What Katy Said
Mr and Mrs T Plus Three

Mummascribbles</div

A Bit Of Everything
Mummuddlingthrough

An overdue update…

Been quiet on the blogging front enjoying Christmas and New Year with the little ones and getting my Penelope and Friends NICU bags completed and handed out as well as trying to organise an event to start raising money for the next batch! Been a busy lady. On top of that I am attempting to learn to knit to make bonding squares for the bags, Laurence is teething and Penelope is a regular toddler tornado!
I am hoping to have the next lot out in February and hoping the first batch were handy to those that received them. 

  
Entering NICU for the first time in a long time was very emotional and brought lots of memories back, both happy and sad. It was so hard to see the little babies that would be spending their first Christmas there, but completely inspiring to see the strength of the parents devoting themselves entirely to their tiny newborns. I slipped in some extra treats in the bags, in the form of selection boxes so the mums and dads could have a little something sugary to keep them going. 
I have been putting collaborative plans in place with a lovely lady on Instagram who is interested in our NICU bags and I can’t wait to reveal that soon 😘 If you’re on Instagram have a look for @bitsandbows2

Big plans for BWS awareness day in a few months are also in the pipe line and we have big decisions to make this year with regards to Penelope potentially needing two different surgical procedures and another trip to Great Ormond Street. 
I think 2016 will have some ups and downs but I’m ready to face it head on and excited about all the good things to come!
Hope everyone is enjoying the new year so far 😘

Happy Diaries

Happy New Year

Happy New Year, all! 🎉🎉🎉

  
These two have had a great Christmas and New Year’s Day! Hope the smiles continue well into 2016.

Hope it’s wonderful for all!

My Random Musings
The Secret Diary of Agent Spitback

G is for Penelope 

That’s an entire year of six weekly blood tests and twelve weekly ultrasounds done! Last ones this week came back fine. Massive phew and now we can begin to enjoy the Christmas period, finally! I said to Penelope she could have an early Christmas present for being so brave but all she wanted was my necklace. So, G is now for Penelope! 

Only five and a half years left. 😢

 
For more information on Beckwith Weidemann please visit http://www.howbigbws.com

 

What Katy Said
A Bit Of Everything

Snapfish Calendar Review 

If you haven’t already got a calendar for 2016, get to Snapfish now! I have just received mine and it’s wonderful. In fact, the whole experience from making it to receiving it was great. The website was easy to navigate, uploading photos took no time at all and there are loads of designs to pick from. It was so simple to create. The hardest thing was choosing which pictures to use! I decided to make a calendar featuring just my two kids, Penelope who is 18 months and Laurence who is 3 months. But, I wanted it to make a statement too. So I used an app on my iPhone to change regular pictures into black and white, then I was able to pick out parts of the picture to be in colour, so just a splash of colour can be seen. 

  
I decided the best design for this would be something bold yet simple, so I chose the ‘simply elegant’ design which provided a black background, perfect for my pictures and to further enhance the splash of colour. 

  
The only thing that could’ve made it better would’ve been the ability to create the calendar on my phone.I had to do it on my laptop, which isn’t a massive thing but would have made it a teensy bit easier (for me). But, uploading pictures was really easy and fast too. The website was in fact very easy to find your way around.

  
There was also the option to personalise dates and add further photos too. I didn’t want to go overboard here as I wanted the theme of my calendar to remain simple, so I added just our birthdays! I tried to choose pictures that reflected each month or season as best as possible and there was the option to add a caption as well so I kept this simplistic also. For instance for October I used a picture from Halloween and captioned it ‘Boo’. For May I used a lovely summery picture of Penelope with the caption ‘Sunshine’. This seemed to work great and the effect was pretty. On one or two pictures I was told that the resolution was low (this was down to putting them through the app that altered their colour) but I went along with it anyway and they actually turned out great! But, it was good that I was given the option to change it prior to receiving it. You could also add more than one photo per month easily, but as I was going for simple I stuck with just the one. From completing my order and receiving a dispatch email, I had my calendar in no time at all and was pleased to see the photos were laminated, it looked fantastic.

  
There is an online chat service available should you have any questions, which is an excellent feature. And delivery was really fast. I would definitely recommend getting an order in now if you’re stuck on Christmas present ideas. It’s a nice, classic gift to give someone, and easier than you might think to make a lovely and personal present which is guaranteed to impress. 

  
  

To get started on your personalised photo calendar click: http://www.snapfish.co.uk/snapfishuk/photo-gifts/photo-calendars

Chilling with Lucas
My Random Musings
The Secret Diary of Agent Spitback
Mummuddlingthrough
My Random Musings

‘Hiperinstalism’ A letter about hyperinsulinism from the kids perspective. 

  
Translation:

Hyperinsulinism 

When I was born I had a seizure. My eyes were going back and forth, I was eating my Cheerios, I couldn’t find them. I couldn’t see my mum either. I was brought to the hospital, the doctors said I was having a seizure. 

As I grew up I kept having the seizures and bad temper tantrums. My mum didn’t know why. She called every doctor but they did not find her (answers).



I grew up even more, I got medicine that would make me grow hair everywhere. I have thick hair and little hairs on my arms and legs. I always feel embarrassed when people ask me why, it’s not normal.



I had some problems with my body, I had to go through terrible stuff but my problem has given me a special title that I love. 




This had me completely in tears. I’ve only ever known hyperinsulinism from an adult point of view and never truly considered the impact it has on children, as Penelope is only 17months. How amazing are these kids?!

To learn more about HI, please visit: http://congenitalhi.org/congenital-hyperinsulinism/

💙

My Kid Doesn't Poop Rainbows

Mummascribbles</div

The Secret Diary of Agent Spitback
My Random Musings

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